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Old 07-22-2021, 02:20 PM #1
yoys yoys is offline
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Default Other treatment options for TN?

My TN story is long like most others, so I will try not to go into much detail here, but I do want to share treatment options that I've found, especially for those who don't have an underlying cause for their TN pain.

I first experienced TN pain, mostly in the area of my right eye, in early 2012. I had neurological testing and imaging done, but nothing remarkable was found. I was given muscle relaxers and NSAIDs, none of which helped. Massage therapy helped a bit until shortly after the appointment ended. Physical therapy was what finally took my pain away. The therapist I was seeing told me his thesis was on the trigeminal nerve. In fact he was able to move my head in a way that turned the pain on and off. When I spoke with my neurologist at the time about it, he laughed and dismissed my physical therapist's suggestion that something was facilitating the trigeminal nerve. I stuck with my therapist and was completely pain free within 3 months.

In early 2021, the dreadful TN pain returned again on my right side, but this time it was mostly in my jaw. I tried to go back to my PT who had helped me before, only to find that he had moved. I saw a different PT and was improving to the point of being pain free for about 2 weeks, but then out of the blue it was back (I think it was because of something I did). During this experience my C2 (or C3 depending on the dr) was noticeably turned to the right, and it was regularly quite sore. I felt like if it was corrected then the pain, or at least the muscle tightness/pulling, would subside. I tried a traditional chiropractor, and after 4 visits of him using an actuator (gentler), I was not improving, so I had more imaging done. The cranial trigeminal MRI showed no change since the last MRI, and no signs of TN. My next step was to see an Upper Cervical Chiropractor. There are a few different types of upper cervical chiropractors, but they all have similar techniques and work on the top two vertebra (c1/c2 atlas and axis), in a gentle manner. I chose to see a NUCCA doctor, because they seemed to be the gentlest, and the website states they have helped people with TN. The NUCCA doctor I am currently in treatment with has training as a traditional chiropractor. I am seeing good results so far. My NUCCA doctor is extremely intelligent, diligent, always striving to learn more to help his patients, caring, gentle, and explains things so you can understand. He has posted videos regarding TN research so if anyone is interested let me know and I will give you the link. While seeing the NUCCA doctor, my new neurologist (a wonderful doctor!) put in an order for me to have a neck MRI, since my TN was accompanied by neck muscle spasms as well as the palpable c2 misalignment. That MRI showed a small bulging disc slightly pressing on the nerve at c3/c4. Could this be a factor in my TN pain?

The reason for my post is to let others know that sometimes TN pain can be caused by other things that are more easily treatable. MRIs over the years have not shown my TN to be caused by tumors or something pressing on the nerve, no signs of MS, or any other diseases that could explain the pain. In my case my TN pain was always accompanied by muscle tightness / pulling in my neck, shoulder, and/or upper back on the same side as the TN pain. With this last bout of TN a prescription NSAID would dampen the pain within a day or two, and then the pain was gone after that. Once off the NSAID I was fine for a few days to a week and then Iíd tighten back up again and the TN pain would return. My neurologist said that NSAIDís would not help true TN, so Iím thinking there must be another factor involved. Maybe bad signals to my brain, wires getting crossed, etc.? I was rear ended in an auto accident back in 2003 where I suffered pain in my right scapula and up to my neck, that was never resolved. Could this be a factor or just a coincidence?

My pain is indeed trigeminal, as it feels like an electric shock stabbing in my jaw, that sometimes makes my eye water. At one point for a few seconds the pain went into my ear, and I wanted to scream it hurt so much. I could not brush my teeth for weeks, I couldn't even eat for a few days and could only drink nutrition shakes. I lost weight, felt depressed some days, frustrated, and worried about my husband who had to take on so much more of a load including worrying about me. I feel for everyone who is suffering from TN, and those who have to helplessly watch their loved ones suffer. Hopefully there will be an answer in sight for your TN story that allows you to live a normal life again.
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Old 07-23-2021, 03:10 AM #2
Missiveforever Missiveforever is offline
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I know this isnít exactly where I should be but Iím not quite sure how to navigate the forums. I was trying to find out if anyone had an echo in both ears after having MVD surgery. Itís very strange. I plan on calling the dr later on today but was hoping that someone else has experienced this and posted about it. I have all the normal post op issues. Nausea, dizziness, tired easily, soreness at the incision site. I do have some concerning numbness. Now I expected the numbness near the incision but I got the surgery on the back right side of my head and my front left side (from my eye brow) up to the my scalp is still numb and Iíve been post op for over a week now. I have my follow up in exactly one week. I have a million and a half questions that Iím hoping to get answered.
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Old 07-23-2021, 03:28 PM #3
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Quote:
Originally Posted by Missiveforever View Post
I know this isnít exactly where I should be but Iím not quite sure how to navigate the forums. I was trying to find out if anyone had an echo in both ears after having MVD surgery. Itís very strange. I plan on calling the dr later on today but was hoping that someone else has experienced this and posted about it. I have all the normal post op issues. Nausea, dizziness, tired easily, soreness at the incision site. I do have some concerning numbness. Now I expected the numbness near the incision but I got the surgery on the back right side of my head and my front left side (from my eye brow) up to the my scalp is still numb and Iíve been post op for over a week now. I have my follow up in exactly one week. I have a million and a half questions that Iím hoping to get answered.
Missiveforever, I am sorry to hear that you are having concerning side effects after your MVD surgery. This particular thread is about non surgical treatment options for TN so I'm afraid your audience will be limited. In order for you to reach a wider audience, you should start a new thread with your question. On the Trigeminal Neuralgia main page ** click on "Post New Thread".
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